The ‘Genetic Information Age’ is here. Are we ready?

The 1997 science fiction film “Gattaca” is set in a dystopic future in which the practice of eugenics — selective breeding designed to pass on desired genetic traits — is the norm.

In this society, couples who want to have children pursue technological reproduction rather than natural procreation. This allows them to pick which of their embryonic children they want to bear after surveying their genomes.

The moral imperative is for parents to conceive and bear the best possible child, not only with preferred physical traits or predispositions for particular talents, but also free from hereditary disease and disability. 

To roll the dice and welcome whatever child you get is seen as irresponsible: Not only would you be knowingly disadvantaging your child, you would also be risking reintroducing undesirable genes back into the gene pool.

Sadly, what was science fiction just a few years ago has become a reality.

In the cover story of the December issue of The Atlantic, reporter Sarah Zhang visits Denmark, a country considered “moral pioneers” in the field of prenatal genetic testing, diagnosis, and decision-making.

In her conversations with families and experts, Zhang uncovers a devastating trend: more than 95% of pregnancies that have a test result showing a likelihood of Trisomy 21, known more commonly as Down syndrome, end in abortion. The phenomenon of selective abortion is gaining traction despite the fact that some results are false positives, and the fact that persons with Trisomy 21 have excellent survival rates and life expectancies.

Persons with Trisomy 21 have varying symptoms (and varying degrees of severity of symptoms), including intellectual disabilities and muscular-skeletal issues. They are more susceptible to heart problems, gastrointestinal abnormalities, and speech issues. Severe cases require significant intervention, therapy, and resources.

Yet others with Down syndrome go to college, find employment, live independently, and get married. Just like any person, their particular challenges and strengths become evident over time, in part due to their genetic makeup as well as the environment in which they develop.

Within hours of the 8,000-word article’s publication online, some were praising Zhang’s reporting for humanizing and giving a voice to people with Down syndrome. Others, including pro-lifers, expressed outrage: For instance, one writer at The Federalist accused the author of seeking to create “sympathy and understanding for eugenics and a modern-day genocide.”

But beyond the piece’s implications for the pro-life and pro-choice movements, Zhang identifies an uncomfortable, telling paradox — one that signals the dawn of what has been called the “genetic information age.” She writes:

“In wealthy countries, it seems to be at once the best and the worst time for Down syndrome. Better health care has more than doubled life expectancy. Better access to education means most children with Down syndrome will learn to read and write. Few people speak publicly about wanting to ‘eliminate’ Down syndrome. Yet individual choices are adding up to something very close to that.”

Put in other words, the article is an invitation for the world to ask itself: How can a society that celebrates diversity, inclusion, and tolerance allow its members who have genetic differences to be systematically, surgically extracted from its population?

How did we get here?

Three overlapping factors have created new moral questions around child-bearing: 1) reproductive technologies, originally designed to assist couples struggling with infertility, have proliferated in type and availability; 2) the project to map the human genome, completed in 2003, has given scientists and doctors a window into the genes of their patients as well as their patients’ gametes; and 3) prenatal genetic testing has become a routine part of obstetric care.

While originally developed to assist couples who were unable to conceive children through natural procreation, artificial reproductive technologies (ART) now comprise a booming fertility industry. Services like in vitro fertilization are now cheaper, less riskier to women, and more likely to be covered by insurance — and thus more widely available.

Because marriage and child-bearing are increasingly delayed in wealthier nations, both infertility and the risk of chromosomal abnormalities are on the rise. This makes in vitro fertilization, now paired with genetic testing, a more desirable method of reproduction: From a consumer standpoint, getting the healthiest possible child is the best investment in terms of time, cost, and risk.

But even if a woman gets pregnant naturally, she is likely to be offered prenatal screening for major chromosomal abnormalities. In the U.S., prenatal testing was generally offered to women over 35 or those with high-risk pregnancies. As of 2019, more than 60% of OBGYN’s had offered it as part of their standard care to all patients. 

In Denmark, nearly all pregnant women choose to have their developing children screened for genetic abnormalities.

Prenatal testing used to be done later in the second trimester if an ultrasound revealed atypical development, or if parents knew they were carriers for genetic conditions. Today, that information — as well as the sex of the baby — can be gleaned from a mother’s blood sample by the 10th week of pregnancy. 

Genetic counselors are supposed to present findings with “value neutrality,” meaning their language and affect is not supposed to sway patients’ decision-making. But Zhang spoke to advocates for persons with Down syndrome who were actively lobbying health care providers to change their language, for fear that the increase in selective abortion was correlated to language that increased parental fear. 

Even shifting language from “risk” to “probability” could help open parents up to choosing life, they argued. 

In many of the cases Zhang learned about, the children were originally wanted — sometimes desperately so — but in one catastrophic moment, they became unwanted. Parental fears about their child’s quality of life as well as disappointment over losing the family that they had hoped for swayed them toward abortion.

“Suddenly,” Zhang writes, “a new power was thrust into the hands of ordinary people — the power to decide what kind of life is worth bringing into the world.”

Emerging moral questions

The world that The Atlantic article describes is one shaped by what Notre Dame law and political science professor O. Carter Snead calls “expressive individualism” in his new book “What It Means to Be Human: The Case for the Body in Public Bioethics” (Harvard University Press, $39.95). 

This philosophy “equates being fully human with finding the unique truth within ourselves and freely constructing our individual lives to reflect it,” writes Snead. It considers human relationships as “transactional, formed by agreements, promises, and consent for the mutual benefits of the parties involved.”

Such a philosophy, he argues, leaves us without a coherent vision of our moral obligations to one another, especially the most vulnerable. This is illustrated in Zhang’s piece by a series of moral quandaries that selective abortion poses. 

If “reproductive decision-making” is an individual choice, what should a society do when thousands (or millions) of individual choices result in massive demographic or sociological changes?

Is a eugenic movement brought about by a society’s own choosing any less problematic than one which is forced on a people, such as the campaign to eradicate persons with disabilities designed by the Nazis or the current campaign by the Chinese government to eliminate its Uyghurs population?

Zhang uncovers what she calls the most perverse moral problem in an exchange with a Danish woman who heads the National Down Syndrome Association. The woman, who is also a mother to 18-year-old son with Down syndrome, educates expectant parents about the condition.

During one of their conversations, the teenage boy leans over and looks at his mother’s phone. The title of a controversial documentary called “Death to Down Syndrome” was displayed on the screen, and he immediately recoiled. 

The reporter realized that he was cognizant of the fact that “there are people who don’t want people like him to be born.” Moreover, his mother supports the right to abortion, even in cases like his.

The scene illustrates the ultimate conundrum for a society that supports the unrestricted right to abortion while claiming to uphold the equality of all human beings as a foundational moral principle: A woman must convince her child that his life is valuable, dignified, and worthy of living, while also supporting the rights of others to end the life of their child with his same genetic markers.

A Catholic response 

The response of a Catholic reader to the article would seem clear-cut: Because abortion is the taking of human life in its most vulnerable stage, it violates the fundamental right of all human beings to continue their life until natural death. Abortion, as well as any reproductive technology involving the creation, testing, and destruction of embryos, must be rejected.

But Catholic teaching does not stop at the moral evaluation of the technology or the act of abortion. The Gospel goes deeper — it speaks to the heart of parents who receive a devastating diagnosis. It speaks to the vocation of health care workers and geneticists to heal when they can and offer comfort when they cannot. And it speaks to families about what it means to be open to the mystery of God’s design for family life.

In a 2019 speech, Pope Francis lamented the fact that thanks to modern prenatal testing techniques, “even the suspicion of an illness, and especially the certainty of a disease, changes the experience of pregnancy and causes deep distress to women and couples.”

The isolation and worry about the suffering that lies ahead, the pope said, “is like a silent cry, a call for help in the darkness, when faced with an illness whose outcome cannot be foreseen with certainty.”

In the face of fear and isolation, parents need support from a larger community, whether through their extended family, the parish, or others who have been in their situation. Support from a community is the first antidote to the individualism and isolation of “reproductive choice.”

When it comes to the issue of medical language, The Atlantic article notes that while genetic counselors and obstetricians are trained and required to present genetic information in as neutral a way as possible to patients, that doesn’t always happen.

Pope Francis has admonished clinicians who use the phrase “incompatible with life” to describe genetic conditions that correspond with short lifespans or severe physical and cognitive impairments. For one thing, where there is a living human being, there is life. 

Second, he says:

“No human being can ever be unfit for life, whether due to age, state of health or quality of existence. Every child who appears in a woman’s womb is a gift that changes a family’s history, the life of fathers and mothers, grandparents and of brothers and sisters. That child needs to be welcomed, loved and nurtured.”

Witnessing to life 

The fact that so many parents, when faced with a diagnosis of Down syndrome or other genetic anomalies, choose abortion tells Catholics a few things about why and where the Gospel is needed. 

A society that reveres health and wellness is one that will have trouble in the face of sickness, aging, and death. It needs to hear the good news that suffering has been redeemed, and that it stretches the hearts of patients, caregivers, and the people they encounter. 

Being mortals, bodily decay or dysfunction will come to all of us; some members of our human family experience it more acutely or earlier than others. They should receive more care, not more marginalization, because of it. 

A materialist society that reduces people to their bodies — and even microscopically, to their genetic material — needs to know the truth that human beings have a body and a soul. The most important quality that children have and develop is their capacity to love, something that does not depend on their physical or cognitive ability.

A consumer-driven society, one that has become accustomed to customizable, curated lifestyles, is one that considers parenthood as a fulfillment of desires or a way to construct meaning and identity. Such a society — which does not pause at the ways it commodifies its children — needs to be reminded to protect “the little ones.” And a society that has unlimited access to information desperately needs wisdom.

The opening credits of “Gattaca” include a cautionary line from the Book of Ecclesiastes: “Consider what God has done: Who can straighten what He has made crooked?”

The answer to this rhetorical question should humble us. It should also help us to see all children not as something owed, but as gifts to be received “as is,” with all of their challenges and strengths.